six yr old son- chiari decompression surgery

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six yr old son- chiari decompression surgery

Postby evergreenmom » Thu Jun 12, 2014 1:35 pm

Hi All,

My six year old has had chair and syrinx for a while and we have been recently surprised that doctors are now recommending decompression surgery. Son seems to be having some symptoms now whereas before he was pretty asymptomatic as far as we could tell.!

Surgery will take place in August with Dr Ellenbogen at Seattle Children's... I would very much appreciate any input as to what post op will be like and how I can best support my little guy through this.

I just cross posted this thread in pediatrics- in the past I've noticed that forum is a little slower so hoping I may get more traction over here...

Thanks for your support
evergreenmom
 
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Re: six yr old son- chiari decompression surgery

Postby donny » Sun Jun 15, 2014 11:40 am

My wife had decompression surgery with Dr Ellenbogen in 05. So far its been holding up, she also had a tethered cord release by him which I believe is retethered.
He is a good NS and conservative and he probably wasn't recomending surgery until now because if your son is/was asymtomatic theres no reason to mess with it. If it aint broke dont fix it. Anyway to your question. what you can expect. My wife had the surgery and from there she went to icu overnight and she was in the hospital for mabey 2 days, she actually stayed a day longer than the Dr said she had to. the extra day was her choice. ICU was purly as a precaution, she just had brain surgery if that makes sence. After that we went home and it takes a while to recover but with her a lot of the pain and symtoms were/ are better. Theres no cure and I dont bellieve he would do surgery unless he believes he can help alleviate your sons symtoms.
hope this helps some
Take care
Don
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Re: six yr old son- chiari decompression surgery

Postby RIrider » Tue Jun 24, 2014 10:46 pm

Hi,
I wish your son good luck. I am sure he will do fine. After my decompression surgury I did get sick/nauseous from the anethesia. Not much you can do about it. The most annoying thing was hearing all the beeping and alarms that seem to go off at all hours. Maybe some headphones with some relaxing music would help. Also, maybe small crafts that would keep him entertained daily. Good luck!

RIrider
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